“An epiphany”

16/08/2014

Mohan Rao reviews The Price of Experience for Economic and Political Weekly (India), August 16, 2014

Let me begin with disclosures: I know Mike Marqusee, and am a profound fan of his work. I loathe cricket, but read his book Anyone But England: An Outsider Looks at English Cricket (1994), a veritable political economy of cricket, with great joy and discovery. I deeply admired If I Am Not for Myself: Journey of an Anti-Zionist Jew (2010), a brave and difficult book to write. I have also read his columns in The Hindu, especially those on the kacheris he attended at the Madras Music Academy.

What an extraordinary American, with a passion for cricket and for Carnatic music! He has been a British citizen for a long time, travelling frequently to India and is a prodigious writer on a remarkably wide range of issues. What is more, he writes beautifully, with coruscating flourishes of history and of poetry, that I admire and envy. The title to this book is derived from William Blake.

Tribute to Health Workers

This little gem of a book shows how remarkable Marqusee is, as he battles the cancer, multiple myeloma, and the United Kingdom’s (UK) relentless attack on the National Health Service (NHS), that he celebrates. The book is a tribute to all the countless health workers, known and unknown, who made his treatment possible, and no one could have asked for a greater tribute. The essays here have been published before in the Guardian and other places, but together they scream out to be read. Although Marqusee abjures appealing to our emotions for pity, he rages for justice in a deeply unfair world.

In 2007 when he was diagnosed with multiple myeloma, a cancer of unknown origin, the certitudes of his world fell apart.

“I felt sadness, but no panic…I walked down the same streets, observed the same things, but felt the larger pattern of life as a terrible condemnation, a standing rejection of my failed organism. As I passed a group of boisterous children, I was overwhelmed by a fear that I would somehow contaminate them” (p 12).

What do you tell people? How are they expected to react? How do you react to their reaction? Is it possible at all in a culture which celebrates beauty and fitness and has no time for people and things imperfect? Blaming the victim places a double burden on sufferers of the disease and of guilt, as if they asked for it.

Most writings on cancer are like what a doctor would write, celebrate the individual’s relentless battle against cancer, glorify victories and use metaphors of war. There is a teleology here of scientific progress, and how individuals have therefore benefited. Marqusee, instead, is a public health worker, looking not at the individual, but the population as a whole, wondering what social, economic and environmental factors have propelled the epidemic of cancers across the globe. He reminds us how doctors, scientists and the industry fought for years not to reveal the links between smoking and cancer or between asbestos and cancer. The war metaphors at an individual level, he argues, detract from a wider approach emphasising population-level prevention. We live in a sea of cancer-causing agents in our environment. What we need are changes in our “health and safety regime, not new drugs”.

“A real general attack on the causes of cancer would require industrial, consumer, and environmental reforms on a vast scale, not scapegoating those patients perceived as shirkers and deserters in a holy war” (p 31).

“Moral Hazard Problems”

Survival rates for patients with cancer have improved markedly over the last two decades. This is not so much due to better drugs, as more early diagnosis and improvements in care. The poor bear a disproportionate burden of all cancers. In the UK, unskilled workers are twice as likely to die from cancers as professionals. Indeed, as a Whitehall study showed, unskilled workers who are non-smokers, are more likely to die of lung cancers than professionals who are smokers. “Between 1999 and 2003, studies found the difference in mortality rates from all cancers between the most deprived and least deprived groups was 70% for men and 40% for women” (p 49). In England and Wales in the period between 1986 and 1999, the gap in survival rates between the rich and poor became more marked for 12 out of 16 cancers among males and nine out of 17 cancers among females, testifying to increasing health inequalities.

Although the United States (US) spends 15% of its gross domestic product on healthcare, compared to 8% in Britain, its health indicators are strikingly poorer. The infant and child mortality rates, the maternal mortality rate, etc, are remarkably lower in the UK, as are expectations of healthy life, which are higher. The UK also has significantly higher human health resources and hospital beds per thousand population. Americans pay more and get fewer returns in healthcare because they do not have a universal, taxpayer funded NHS, but a “free market” system dominated by private health insurance. About 46 million Americans have no health insurance; each year 18,000 deaths occur among those untreated. Of the 2 million Americans who went bankrupt because of medical bills in 2008, three quarters did so despite having health insurance.

“The US system is not only chaotic and cruelly unreliable, it is also extraordinarily and unnecessarily expensive. Only 65-75% of the
revenue from premiums actually goes to paying for healthcare; 25-35% goes to administration, not of healthcare but of the insurance schemes themselves, including large executive salaries and bonuses. Five per cent or more is siphoned off as profits” (p 41).

Last year the five biggest insurance companies of the US posted a combined profit of $12.2 billion, a 50% increase since 2008. Over the same year, they dropped 2.7 million customers from their rolls.

It is a cruel irony that India, a country with one of the poorest health indicators in the world, is working to build an American model of healthcare delivery, with massive public subsidies to the world’s largest and least regulated private medical industry in the world, through public insurance. We hear therefore of “moral hazard” problems – what a lovely sanitary way of labelling cheating of patients – of districts with 70% hysterectomy rates, of huge increases in unnecessary investigations and procedures, and overall increase in prices.

Apartheid System of Care

Marqusee gets the most sophisticated treatment possible at St Bartholomew’s Hospital in London, entirely free. Not as charity but as a right, he says, as he pays tribute to the nameless people who struggled to make the NHS a reality, a large number among them labour activists and socialists. When he is suggested stem cell therapy, with his sister willing to donate matching stem cells, she is flown from the US, also at NHS expense. “I am alive now”, he writes, “not simply because of scientific advances, but because of the application of those advances to human welfare – made possible by the NHS. In the US, the life-extending treatments I’ve received would have been financially devastating or simply beyond my means” (p 74).

But the same ideologies, the same forces, that shape healthcare in the US and India are remorselessly carving away the NHS. Subject to a severe financial squeeze, jobs and services are being reduced, introducing policy-led inefficiencies. These inefficiencies are then cited as reasons for a further dose of commercialisation. Hospitals are being encouraged to take in larger proportions of privately insured paying patients. What is being introduced is an apartheid system: one level of care and services for the poor and another for the rich, increasingly squeezing the poor out of the system. Testifying to the amazing care he has received at Barts, Marqusee tells us the one time things went wrong was when a nurse on contract attended to him. Contracting out such jobs might save money, but can and does cost lives.

He, therefore, appeals to the NHS workers to take action to save the NHS:

“You may feel you have little power, but collectively you have much greater power than individual patients have. We need you to take action on our behalf, action that is a necessary extension of the sense of dedication that guides your daily work” (p 51).

The NHS is now debating the sustainability of including some drugs for breast cancer treatment due to the costs. Marqusee reveals that his treatment with Revlimid alone costs the NHS more than £40,000 (or more than Rs 41 lakh) a year. Celgene, a US-based corporation, owns the licence on Revlimid and charges extortionate rates for this product. Celgene’s 2012 revenues were $6.2 billion in 2012, up from $5.5 billion the previous year. After taxes, at an effective rate of only 5%, profits on that revenue amounted to $1.6 billion, a 26% profits to sales ratio, high even by pharma in dustry standards. Like all other pharma companies, Celgene claims the profits
are necessary for investments in research and development. Like other pharma companies, Celgene is also lying. It spends far more on sales, marketing, lobbying, legal fees and distributing the profits. “This multi-billion dollar industry is based on a state-enforced private monopoly of an essential good” (p 100).

Celgene has been contributing to the American Legislative Exchange Council (ALEC), a lobbying body. ALEC’s causes include reducing corporate regulation and taxation, privatising essential services, minimising environmental regulations and promoting gun rights in the US. The other contributors to ALEC included Coca Cola, Wendy’s, Kraft Foods, McDonald’s, Apple, Procter and Gamble and Walmart. ALEC was also involved in lobbying for “stand your ground” laws used in Florida to justify the murder of a black teenager Trayvon Martin on the grounds of suspicion. In response to this, a campaign induced all the above companies to withdraw their contributions to ALEC. Not so Celgene, GlaxoSmithKline, Bayer, Pfizer and PHARMA, the pharma trade group.

ALEC is now lobbying in the UK to prevent plain packaging of cigarettes. Marqusee notes the irony that his treatment goes towards Celgene’s profits, towards lobbying against cancer prevention. He says he is grateful to be alive, for music, for poetry, for cricket, for loving relationships and for writing. But “one of the reasons I’m glad to be alive is that I can have a go at these bastards” (p 96).

Eloquently written, passionate, sad, joyous, and above all politically engaged, the book is an epiphany. It shows us how health and disease are socially made, and how disease priorities are set in societies by larger economic and political forces. And that we as people will collectively have to claim our futures. It is compulsory reading for all health workers, public health researchers, and indeed, the general public. My sister was recently diagnosed to have multiple myeloma. She will learn a lot from this book, including courage and daring.

Mohan Rao is with the Centre of Social Medicine and Community Health, Jawaharlal Nehru University, New Delhi.